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RE: dizziness


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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • #16
    Re: RE: dizziness

    Hi everyone , I am back and I will try to have input as much as I can . I have promised my blessed doctors at NEMC especially the most splendor iforous of all Dr. Marty Maron that I would let you all know as much as I can between rest periods how I am doing and all the changes and improvements to date ( much more to come I am sure). Iwill reply to this one you are all wonderfull and I would not have had the courage or knowledge to have made such a serious decision to have the surgery had you not been here for me .

    So Jim , and all I don't know about windows of enlightenment but I can speak to my own experience regarding numbness. Over the past several years my feet , my hands and in general my bones have been waging a battle . I was diagnosed last year with severe degenerative joint disease resulting after bouts of severe sciatica. What was interesting was that I was also experiencing an increase in severe carpal tunnel syndrome which I have had for 17+ years but now it was worse. I was also having a new problem: painfull ,painfull ,burning, numb often throbbing, hands and feet and yes my legs also were being effected. I would notice that it was all worse when I was up on my feet more and better after a night of rest. We could attribute this to many reasons including neuropathy from diabetes. Another point : my blood sugars were within normal with diet and oral antidiabetic agents.

    My vision was also inconsistent with more floaters and glares and streaks wavery blurs and the vision checked was OK. Boy the pain maxed out post surgery and for awhile as I gained 18 pounds within 2 days post op from fluid I didn't think it could get worse. As the wait came down and the fluid disipated the pain aches and all went away even the numbness. I was Alittle reluctant to tell Dr. Maron for fear it was tempory but it has been 1 week and 3 days later and I have minimal numbness in 3 fingers on each hand like I did years ago pre symptoms of Advanced HCM; remember I was only diagnosed less than 3 years ago but had had increasing symptoms for about the last 10 years. The pain and burning is also gone , Dr. Maron expects only more good things to come . My vision seems more stable , the severe reddness that everyone would always assume was me being hot and looking very flushed is gone my kids and family think I look different , My voice is higher my brain is inventing devises left and right I started writing my story and planning to contact the local reporters I knew and worked with before my departure from public life .. I want everyone to know what can be done to help us and how wonderfull it is to have a new center on the east coast specifically for HCM victims that offers hope and promise to those of us with the disease and support for their loved ones. My family and loved ones were constantly appraised of my status and actively sought out by him so that they could be kept up to speed and given the realities of my progress.

    Dr. Maron deserves a humanitarian award for not faltering once. He was ever vigilant in boosting my spirits when I felt crappy and gave me true promises of what to expect . I couldn't have felt more watched over and confident in him. Dr. Rastegar and I seemed to always be on the same page and he also included my feelings and opinion in all that he could where my care and recovery were concerned. And Doug came to visit and we met he inspirers my recovery . I will be in touch soon Doug , thankyou. Lisa called Dr. Maron to check on me , thankyou Lisa .There are so many more to mention and I will try to continue after I rest abit .

    So for now beddy bye, Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


    • #17
      Re: RE: dizziness

      Pam, Rest well, I'm sure you're exhausted after that post. Thanks for sharing so much info. You've answered a lot of questions. Hoping you continue to improve daily, Linda


      • #18
        Re: RE: dizziness

        Pam, thanks for telling your story. I'm glad you're feeling so much better.


        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.


        • #19
          Re: RE: dizziness

          Thanks for the great story, i really like reading sucess stories, remember don't push yourself, give your body time to heal
          Take Care
          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9


          • #20
            Re: RE: dizziness

            October 15, 2003 I looked at my clock ...it was 3pm...my heart jumped as I thought Pam must be out of surgury... I hope she is OK!

            I did call to check and make sure you were OK. I was told simply everything is fine. I asked someone to get a message to your family that I had called and if you or they needed anything to let me know.

            I was thrilled to see a posting a short while later that your son Tim had done, saying you were doing well.

            I hope you continue on the path to uneventful recovery...but if you hit a snag...do not worry it happens and you have a great team to get you over any bumps in the road.

            Be well....get some rest and know we are thinking of you!

            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)


            • #21
              Re: RE: dizziness


              Thanks for the informative post. I hope your recovery continues to go well. You know you have a lot of people behind you here

              Take care,

              "Some days you're the dog... some days you're the hydrant."


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